A PAIN TO EXPLAIN

I am reposting this original post from when I was first diagnosed.  It tells the story of my early days of PFD. I'm happy to say that I am doing much much better.  For those seeking help, I hope you will take time to visit some of my early entries.  This post is featured in the book Pelvic Pain Explained by Stephanie A. Prendergast and Elizabeth H. Rummer.  They were the first physical therapists that I visited who diagnosed me and helped me on the road to healing.

In December, 2006 my life came to a butt numbing, crotch burning halt. My husband and I were on a flight to California. Halfway through the flight, I started to go numb in the “down there” region. I squirmed in my seat in fear, praying that we were close to landing. I leaned over and whispered to him that I was losing feeling in my crotch and thighs. Being an emergency medicine doctor, he went straight into E.R. mode. He thought I might be having a spinal cord emergency and that as soon as we landed; we may need to get to a hospital for a stat MRI scan.

Although I made it through that weekend without an E.R. visit, a few weeks later I had another episode, which in the famous words of my husband, “bought me a ticket to the E.R.” At the hospital, I learned I had injured some delicate muscles I didn’t even know I had, and apparently one of my nerves was a little ticked off too. The more formal diagnoses: pelvic floor dysfunction (PFD) with pudendal neuralgia (PN). Ah, such a clinical name for “pain in the ass.” I later learned that pudendal is the Latin word for “shame.” “Great,” I thought, “I have a shameful, painful condition. How do I explain that?”

It didn’t take long for family and friends to hear that I had an injury and was in bed on pain medication. Lots of pain medication. I called my dog training students and canceled sessions, made arrangements to have the house cleaned and the farm chores done. Like it or not, I was down for the count and closed for business.

When family and friends suddenly see an active, healthy woman flat in bed and unable to sit, they ask questions. “What did you do exactly?” “Can it be fixed?” “Why can’t you sit?” What hurts?” “How could this happen to you? You’re so healthy!” The questions were endless.

How you choose to respond to such questions is a very personal decision. I found with some family members, there was the “too much information” factor. For instance, for my older brother, just hearing “back pain” was plenty. Then there are the old soul friends with whom I was able to share many details. With them I’ve been able to talk about the dark, scary sleepless nights. I’ve whined about the lack of sex in my marriage. I’ve also shared with them the private details of PT, and the more humorous spin I tend to put on this whole deal.

When thinking about whom you tell and what you tell them, it is important to think about the motivation of the person asking. Is this a close friend with genuine concern? Is this person a snoopy neighbor or colleague? Is this person really a friend?

I’ve given all sorts of responses and some have been more tactful than others. I remember one male acquaintance kept asking for more details. Finally, I said to him, “If I tell you any more details, I’m certain you’ll blush!” He never asked me another question again. For a while I was telling people that I have a back injury with some muscle and nerve trauma. But, that explanation was met with numerous recommendations about back cures, which became tiresome.

Now, I am more relaxed about the whole thing. If someone asks me, I give a brief and vague response. This usually happens when I am in a public place and some chivalrous man will offer me his seat. Really, they still do that! I politely reject the offer, and if they persist, I say, “Thanks, I’m more comfortable standing, I have an injury”.

My PT gave me some incredible advice. I asked her how to respond to inquiries regarding my sudden need to stand up all the time and all the other life-style changes that accompany the spectrum of PFD. She said that I might ask, “What is it that you’d like to know?”  I love that response. It allows for a gentle pause, and time for the other person to respectfully reframe their question, or change the subject.

I don’t think there are any easy ways to communicate what PFD truly is to others in our everyday lives. Even our doctors and PT’s have trouble at times. What I think is most important, is that as we work towards healing, we do our best to surround ourselves with a caring support system. I have shed many tears in my horse’s fur on a quiet night in the barn. And ya know, he never asked “Why?”